When Ben was transferred to DHMC shortly after birth, I remember meetings. Meetings with lots of doctors. They told us that Ben would most likely never come off the ventilator. We were shocked. We had to decide whether or not to take him off of life support. HARD! Thankfully Ben made that decision for us. Then there were his feedings. He did not have a great suck/swallow/breathe reflex. It was more like suck/choke/gag/sort-a-swallow/stop breathing/turn blue reflex. I was determined to feed him by mouth...not knowing at the time that it was detrimental to him. It took about a month and a good surgeon to knock some sense into this determined mother. We had to decide whether or not to put in a g-tube. HARD! A year later he had a swallow test. It showed aspiration. We had to decide whether or not to do a "nissan fundoplication". (it's a stomach wrap) Major surgery. HARD! As a result of that surgery, he wasn't able to manage his secretions anymore. He needed a trach. We had to decide. HARD! Ben's muscles have severe contractures. There was a surgery available to help ease some of those contractures. We had to decide whether or not to go for it. HARD! Then there were the multiple PICU stays due to bacterial/viral pneumonias and RSV. The DNR subject came up often. We had to decide. HARD! This just scratches the surface. Here we are...7 years later. It hasn't gotten any easier. Today's subject? Bringing Ben home on a vent. UGH! I've been avoiding this his whole life. "Ben's lungs are tired, he isn't weaning from the vent" they tell me. If I want to take him home, this is my only option. HARD! It's life altering. It's overwhelming. It's doable.
15 comments:
Bless you and Ben and your family.
Still in our prayers.
Life has thrown you some HARD stuff. I love you.
xo
Becky--hugs and prayers!
you are one amazing lady!!
You can do hard things!
I love you and Ben. You are always in my thoughts and prayers. You can do this Becky! With God all things are possible.
I love how Sister Beck teaches us that "We can do hard things." I hope you know that you teach so many the same lesson. I know it's hard-know you are loved!!!!
If anything you have learned to follow the path the Lord has set before you and this will be no different. Trust, have faith, know you have the prayers and love of so many and the eternal support of your Heavenly Father. You can do this just as you have done everything else, one breath, one moment, one step at a time. Love you.
You are right Becky--YOU CAN DO IT! You are amazing. Love you!
Love you. And Ben. *Hugs*
You've both come so far with so much to endure. "Carry on, Carry on, carry on." What's that saying, "I didn't say it would be easy- I only said it would be worth it"- or something like that. Ben has been worth every second here on earth- and you have been there to help him- both of you and your family have rewards in heaven awaiting you. You can do this Becky.
I so hate HARD Becky. All I got are some bear hugs girlie. Everyone needs a good squeezie now and again.
Hugs,
Trina and Jophie
So sorry for all these very difficult decisions for you and your family and for Ben. You are amazing, and I know you'll have lots of love and support to do this. Do they have portable/battery operated vents so you can take him out on occasion?
Well, you've taken care of vents before, you can do it again. And know that Ben will probably be safer in your home on a vent than he will be in the hospital on a vent. A sad reality, but true.
Doesn't make it easy, though. Prayers, as always, coming your way.
my goodness! what's next? oh that's right, NO BRAKES!
Okay, tears again. I'm sorry hard is to hard. But we're grateful you can come home, that technology has advanced so far to make this possible.
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